Woman deals with undiagnosed disease: 'What kind of life is this'

(Left) Amy is featured before her disease began affecting her body and medications caused her to swell with fluids. (Right) Amy is now living with an undiagnosed disease and fighting to know what is causing her body to react the way it is.

By ANGEL McCURDY / Daily News

Published: Friday, May 3, 2013 at 03:05 PM.

DeFUNIAK SPRINGS — On a spring morning, Amy Sipos sits in the living room of her parents’ home sipping a cup of tea.

Her body and face are swollen from medications that may or may not be helping.

Just five years ago, the then 26-year-old Sipos was working as a bartender and looking forward to nursing school.

She then went from being a healthy, vibrant woman to being hospitalized frequently and barely being able to keep her eyes open from exhaustion.

Now 31, Sipos says doctors have diagnosed her with an undifferentiated connective tissue disease, which describes people who have symptoms that look like a systemic autoimmune disorder or connective tissue disease.

Beyond that, doctors don’t know.

“They’re puzzled,” said Gina Sipos, Amy’s mom. “They can’t even get a name for it. Amy doesn’t fit in any category.”

Sipos caught a cold while on a cruise in 2008. The sickness activated the autoimmune deficiency that causes her white blood cells to attack her body.

She’s spent the last five years in and out of hospitals with a long list of problems.

“I’ve been reduced to an adult child,” Sipos said. “I’m living back at home experiencing life in prison in the hospital or at my parents’ with constant home health, but that’s my life.

“I went from being extremely independent to needing help getting dressed.”

Sipos isn’t looking for pity. She says she wants to encourage others to be their own advocates and wants to find a way to change the way health care is distributed.

“Somebody always has it worse than me,” she said.

Sipos is waiting for a call from her doctors to tell her it’s her turn to travel to National Institutes of Health in Bethesda, Md. for more testing. All Sipos hopes for is a name for the disease and any semblance of the life she once knew.

Her family says they are raising funds to get her to Bethesda and to cover medical expenses such as hospital bills and medication that costs $3,000 a month to refill.

A fundraiser is scheduled for 3 p.m. May 18 at AMVETS Post 178 in DeFuniak Springs. It will include a fish fry, auction and karaoke.

Sipos said some days are good; she can walk on her own, stay awake for several hours at a time and play with her dog, Boxer. But most days she must use a walker or a wheelchair, and sleeps much of the time only to wake up to pain.

She says the moments when the pain is gone are noticeable because it’s a feeling she no longer is accustomed to.

She takes more than a dozen medications a day and another half dozen medications every week.She must wear a mask anytime she is around someone with a cold, and her only adventures are occasional trips to the pharmacy with her mother.

“I had a life and now — what kind of life is this,” Sipos said. “I know there’s not likely to be a cure, so I won’t be able to go back to how I was, but I’m hoping to be as close to how I was as possible.”

DeFUNIAK SPRINGS — On a spring morning, Amy Sipos sits in the living room of her parents’ home sipping a cup of tea.

Her body and face are swollen from medications that may or may not be helping.

Just five years ago, the then 26-year-old Sipos was working as a bartender and looking forward to nursing school.

She then went from being a healthy, vibrant woman to being hospitalized frequently and barely being able to keep her eyes open from exhaustion.

Now 31, Sipos says doctors have diagnosed her with an undifferentiated connective tissue disease, which describes people who have symptoms that look like a systemic autoimmune disorder or connective tissue disease.

Beyond that, doctors don’t know.

“They’re puzzled,” said Gina Sipos, Amy’s mom. “They can’t even get a name for it. Amy doesn’t fit in any category.”

Sipos caught a cold while on a cruise in 2008. The sickness activated the autoimmune deficiency that causes her white blood cells to attack her body.

She’s spent the last five years in and out of hospitals with a long list of problems.

“I’ve been reduced to an adult child,” Sipos said. “I’m living back at home experiencing life in prison in the hospital or at my parents’ with constant home health, but that’s my life.

“I went from being extremely independent to needing help getting dressed.”

Sipos isn’t looking for pity. She says she wants to encourage others to be their own advocates and wants to find a way to change the way health care is distributed.

“Somebody always has it worse than me,” she said.

Sipos is waiting for a call from her doctors to tell her it’s her turn to travel to National Institutes of Health in Bethesda, Md. for more testing. All Sipos hopes for is a name for the disease and any semblance of the life she once knew.

Her family says they are raising funds to get her to Bethesda and to cover medical expenses such as hospital bills and medication that costs $3,000 a month to refill.

A fundraiser is scheduled for 3 p.m. May 18 at AMVETS Post 178 in DeFuniak Springs. It will include a fish fry, auction and karaoke.

Sipos said some days are good; she can walk on her own, stay awake for several hours at a time and play with her dog, Boxer. But most days she must use a walker or a wheelchair, and sleeps much of the time only to wake up to pain.

She says the moments when the pain is gone are noticeable because it’s a feeling she no longer is accustomed to.

She takes more than a dozen medications a day and another half dozen medications every week.She must wear a mask anytime she is around someone with a cold, and her only adventures are occasional trips to the pharmacy with her mother.

“I had a life and now — what kind of life is this,” Sipos said. “I know there’s not likely to be a cure, so I won’t be able to go back to how I was, but I’m hoping to be as close to how I was as possible.”